A little disclaimer. I will be talking about some new medications I am trying. While they work for me, I am not a doctor. This should not in any way be considered medical advice. Please make sure to speak with your own doctor about any medications you may be taking or are interested in trying for your own treatment plan.
What a whirl wind few weeks it has been around here! I started seeing a new pain management doctor, Dr. Upadhyay, with Keystone Pain and Rehabilitation here in Pennsylvania. ( I will be adding him to our doctors list!) He was AMAZING! When you live with several conditions that are relatively unknown it can be extraordinarily hard to find a doctor that will listen and help you. He started me on Doxepin and Zonisamide, and the changes have been incredible. I have been able to severely cut down on my narcotic usage, and haven’t had to use my wheel chair in weeks. While I always like to share what does and doesn’t work for me, I am not a doctor, and therefore can not give medical advise!
If you have known me for more than 10 minutes, you know that I am a hard core advocate for invisible illnesses. I mainly focus on Chiari and Ehlers- Danlos, not they are not the only ones I work with. 🙂 There are a wealth of organizations out there that are working tirelessly on our behalf to make sure our voices are being heard! I will be listing their links at the end of this post. Now the fun part! What can you do to help advocate for your specific cause? Some are easier than others, but here are some basic tips.
- Start with what you know. If you live with a condition day in and day out, you are more intimately aware of how it affects a person’s daily life than most others.
- How does it affect you?
- What are some things you want people to know about your specific condition?
- What is being done right now to help?
- Have information at hand to back up what you are saying. I carry business cards and “pass it on” cards from Chiari Gear. It’s a good idea to be able to have something at hand until you get used to speaking to strangers about something so personal! Even if its just hand written note cards.
- Be prepared for questions. People are curious by nature. If you start talking about your condition, people are going to want to know more about it. Don’t be discouraged if they don’t listen, don’t take you seriously, or are just flat out rude. Remember step one! Education! You can’t teach people who don’t want to learn. Best to just move on I say!
- Social media can be your best friend. Post E-cards, notes, photos, statistics, ect. Anything to get people talking. Follow other people with your same condition. Work as a team!
- This one is usually the toughest for most. Not because they don’t want to put in the effort, but because it can be physically, emotionally and spiritually draining talking about this one aspect of your life day in and day out as well as living it! Remember what your doing it for!!
- I talk to anyone and every one who will listen to me. I wear Chiari and EDS gear, have purple hair, talk about my scar, tell people why I have to use that handicap placard, explain why I have to use the motor buggy at the grocery when they stare at me because they think I am being lazy.
- Along with my husbands help, we managed to get several bills passed though the PA Senate to recognize September as Chiari Awareness month.
- I sold bracelets and gave cards out to strangers to help spread the story and raise money for awareness education
- I council others with Chiari and EDS to help them better understand what they are going through.
- Biggest of all, I started the blog!
It may seem overwhelming at first. I have been an advocate going on four years now, and I still get overwhelmed. You brain didn’t fall out in a day, so take your time! ( Chiari joke lol) Please take the time to check out these other wonderful organizations! Please tell them lifewithchiari.com sent you 🙂 If you have any questions, or your struggling to get started, you can reach out to me through here on the blog, or via the following: